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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, December 18, 2014

Today and all the other days..

Jeff- he is healing up nicely from his 'home lighting' experience. It is very hard to be in carpentry and not be able to use your hands the way you are used to.

Brynn- visited the genetics counselor. Left feeling more secure about this pregnancy. The baby is doing great so far and I am finally starting to feel a little less yucky.. Thank you second trimester.

I still think it's a boy.. Jeff thinks it's a girl. We will get to find out in about five weeks.

Ryleigh- is amazing! She is doing so well in school. I just love this girl.

Alex- has had some very good weeks. Both last week and this week he is holding stable.. In fact his antibodies dropped again. One of his docs told us today that Stanford does some special testing that they would like to bring to PCH and Alex would be a perfect patient to begin with. Hopefully we can get some more clues to his complex case. Although I haven't met a kid that needs a transplant that isn't a complex case. Speaking of other kids.. Teagan, who is also stable right now. Is such an awesome friend and he and Gator talked with Hope Woodside about organ donation. Their story should air on Christmas night at 9 o'clock. Teagan's mom Brytten is amazing and helped a ton because the interview was while Gator was in the ICU.. So she was our voice!

Eden- this super star just had her Christmas program for preschool! She did awesome!

My favorite song she did was S A N T A..

Gator facetimed into the program from home. So did grandma and grandpa Clawson.. Grandma Homer made it in person and Papa Homer stayed with the boy. She got Sams Club slushy and pretzels as her post program treats. Yummy!

MayLee May- I ask her how old she is and she says 4.. She is so full of it for a not even 2 year old. She even decided to wear panties and made it to the potty two times.. It was short lived. Dang..